I have been dragging my feet for a while on this update.
We have waffled so much with the decision to place a port a cath. Last week Mattie ended up needing an IV to maintain her blood pressure. After talking with her dysautonomia docs, we changed some protocols for treating her blood pressure. We upped her medication used to regulate her BP and also added more salt tablets. The protocol also called for an additional liter of fluids by mouth daily. Mattie only consumes the required amount a few days a week. Even with the suggested changes, Mattie’s blood pressure is still dipping into the low end of things. She is hitting IV levels at least once or twice a day. Adding salt has brought it up after the dips, but it is clear that more IV’s are in our future. We are giving her the maximum amount of salt a day, and have doubled the blood pressure regulation medications.
So what is a port a cath??? A port a cath is small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical “needle stick”.
Mattie will be having the port placed on March 16th at CHOA. We are planning on the surgery being an outpatient stay, but are being smart and packing bags.
Mattie will also be having a direct laryngoscopy and bronchoscopy to check out her airway. It is always nice when we can do a two-for-one sedation to minimize how often she is being put under sedation. Mattie has been having a lot of breathlessness with very minimal physical activity. They are doing the scopes just to make sure that nothing is going on besides just the typical mito muscle weakness.
Please also be praying for Steve. He had a spot under his eye removed a couple of weeks ago. The pathology report came back showing that is it a basal cell carcinoma. This is the most mild of skin cancers….but it is still cancer. The growth has been on his face for several years, and has been removed before. He will be undergoing the Mohs Micrographic Surgery on March 23rd to remove the remaining cancer.
I have a friend that is in need of prayers. I don’t think she is ready for her name to be thrown out there… but please add her to your prayer lists. She was just diagnosed with breast cancer. She is a young mom, and amazing lady. Cancer doesn’t know who it is messing with!
Thank you for keeping up with our updates and just loving our family,
PS. We will walking with the UMDF again this year. Keep an eye out for information on how you can donate or join our team to walk with us.